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Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers

Ezekiel J. Emanuel, MD, PhD; Diane L. Fairclough, DPH; Julia Slutsman, BA; and Linda L. Emanuel, MD, PhD
[+] Article and Author Information

From National Institutes of Health, Bethesda, Maryland; AMC Cancer Research Center, Denver, Colorado; Johns Hopkins University, Baltimore, Maryland; and the Institute of Ethics, American Medical Association, Chicago, Illinois.


Acknowledgments: The authors thank Drs. DeWitt Baldwin, Marion Danis, Lee Goldman, and Russell Phillips for critical review of the manuscript. They also thank Erica Omundsen for research assistance and Alma Kuby and the National Opinion Research Council for conducting the patient and caregiver interviews.

Grant Support: In part by grants from the Commonwealth Fund and the Nathan Cummings Foundation.

Requests for Single Reprints: Ezekiel J. Emanuel, MD, PhD, Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892-1156.

Requests To Purchase Bulk Reprints (minimum, 100 copies): the Reprints Coordinator; phone, 215-351-2657; e-mail, reprints@mail.acponline.org.

Current Author Addresses: Dr. E.J. Emanuel: Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892-1156.

Dr. Fairclough: Center for Research Methodology and Biometrics, AMC Cancer Research Center, 1600 Pierce Street, Denver, CO 80214.

Ms. Slutsman: Department of Health Policy and Management, Johns Hopkins University School of Hygiene and Public Health, 615 North Wolfe Street, Baltimore, MD 21205.

Dr. L.L. Emanuel: Institute of Ethics, American Medical Association, 515 North State Street, Chicago, IL 60610.

Author Contributions: Conception and design: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.

Analysis and interpretation of the data: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.

Drafting of the article: E.J. Emanuel, D.L. Fairclough, J. Slutsman, L.L. Emanuel.

Critical revision of the article for important intellectual content: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.

Final approval of the article: E.J. Emanuel, D.L. Fairclough, J. Slutsman, L.L. Emanuel.

Statistical expertise: D.L. Fairclough.

Obtaining of funding: E.J. Emanuel, L.L. Emanuel.

Administrative, technical, or logistic support: J. Slutsman.

Collection and assembly of data: E.J. Emanuel, J. Slutsman.


Ann Intern Med. 2000;132(6):451-459. doi:10.7326/0003-4819-132-6-200003210-00005
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Serious illness has an adverse effect on patients, family, and friends. Previous studies have demonstrated that caregivers of patients with cancer and dementia have increased health problems and psychosocial stress (17). For example, studies have reported that up to one third of spouses of patients with terminal cancer have depressive symptoms (89). Families of terminally ill patients also experience adverse economic effects. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) reported that families of seriously ill patients experienced substantial economic losses. In 20% of families, a family member had to stop working; 31% of families lost most of their savings (7).

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Figures

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Figure 1.
Flow diagram of patient identification and enrollment.

CMSA = consolidated metropolitan statistical area.

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Figure 2.
Effect of care needs and economic burdens on terminally ill patients.PPP

White bars indicate patients with few care needs; striped bars indicate patients with substantial care needs. * = 0.005; ** = 0.001; *** = 0.004.

Grahic Jump Location
Grahic Jump Location
Figure 3.
Effect of care needs on caregivers of terminally ill patients. Top.PPBottom.PP

Relation between patients' care needs and caregivers' psychosocial burdens. White bars indicate caregivers of patients with few care needs; striped bars indicate caregivers of patients with substantial care needs. * = 0.01; ** = 0.001. Relation between the empathy of patients' physicians and the psychosocial burdens of caretakers of patients with substantial care needs. White bars indicate caregivers of patients with empathetic physicians; striped bars indicate caregivers of patients with nonempathetic physicians. * = 0.005; ** = 0.015.

Grahic Jump Location
Grahic Jump Location
Figure 4.
A model explaining a mechanism for economic and other burdens that terminal illness places on patients and caregivers.
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Summary for Patients

Understanding the Economic and Other Burdens of Terminal Illness for Patients and Their Caregivers

The summary below is from the full report titled “Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers.”. It is in the 21 March 2000 issue of Annals of Internal Medicine (volume 132, pages 451-459). The authors are E.J. Emanuel, D.L. Fairclough, J. Slutsman, and L.L. Emanuel.

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